World IBD Day 2020

And so once again World IBD is with us once again – so happy 19th May! This years’s theme is Work, which in the current global situation is looking a bit different for many of us. In this post I’m going to share with you some of my work related IBD moments, challenges and successes.

I was diagnosed with Ulcerative Colitis in 2005. At the time I was self-employed as a drama practitioner and did some office temping too. 3 months later I was beign treated with mesalazine suppositories, but things were getting worse, and one Friday I went to the GP who prescirbed prednisilone foam enemas. That Saturday I took a group of young people to Yprk for the day, and remember spending most of my lunch break in the toilet, sleeping most of Sunday and being taken back to the GP by my mum on Monday and sent to hospital. Various drugs were tried but I ended up hacvign an emergency colectomy, with a lenghty recovery period following the laperotomy (mid-line incision) and adapting to my ilesotomy. I wasn’t able to work, and was in recepit of what was the time called incapacity benefit for around 3 months. I still lived with my parents, and once I had recovered I was able to gain my first full time youth work post in Peterborough. Adjusting to a job with unsocial hours and work in schools where toilets had to be located and used at set times made having the bag interesting, but not too much of a hassle. I did an occasionall bag change at work, and don’t remember having any major leaks at work.

In August 2006 I had the first stage of my ileo-anal pouch formation. I had complications, and was unable to return to work until I had had further surgery in February 2007 (I did go back for one day and lasted just a few hours). I was fortunate to be able to recieve some counselling support via the occupational health department, but eventually went back. I continued to have issues with pain and leakage, which were temporarily helped with a course of Infliximab. I completed my MA Youth & Community Work in Durham as a part time student, and was then, in 2010, able to gain a mangement position down in Wiltshire, managing a youth centre in one area and overseeing the running of one in the adjacent town too. Late nights 3 nights a week meant I was pretty useless at the weekends, and the leakage from my pouch, as well as the bad skin from my foam enemas were an ongoign issue. I developed a huge abscess, had some time off with low mood and then decided to change role, and was able to find a much less demanding 9-5 role in 2013. This did knock my confidence and make me question what I would be able to do in the future. I had started Humeria, which helped a little but not enough. In 2015 I started another new management role, and in 2016 had my pouch defunctioned to see if this would resolve the issues I continued to have with frequent abscesses. A year later I needed the pouch excised and had my rectum and anus removed, and had a very long recovery from that surgery (2 years on total for it to heal, although I was able to work for much of that)/ I had a long period of daily dressing changes, and then trips to more specialists to try and get the wound to heal. Since it has been healed I have been, mostly, symptom free.

So reading back over that I have been very fortunate to have a number of supportive managers, and work for organisations that have had good sick pay and occupational health support. When I had a new manager I would use materials from Crohn’s & Colitis UK to explain what my condiion was and what I needed. I didn’t always take time off when I should, and have really struggled. Now however I am in a great place, and whilst I don’t believe I am cured, I am certainly in remission.

I am proud of what I have achieved at work, and those achievements certianly outweigh the harder times. You need to work with your IBD team, be honest with yourself and keep a work life balance – don’t put everythign into work so you spend all weekend recovering!

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